WASHINGTON – U.S. Senator Sam Brownback today held a hearing of the Science, Technology and Space Subcommittee examining the scientific merits of pre-natal screening and diagnostic testing technologies and their impact on patients, doctors, parents and children, particularly those individuals with Down syndrome.

“As we consider the fast pace of scientific and technological progress in our modern world, we must not lose our moral compass and give way to ‘free market eugenics,’” Brownback said. “It would be devastating to replace the ‘first, do no harm’ principle of medical ethics with a more utilitarian model based on collective economic viability. We don’t want a world where parents feel driven to justify their children’s existence and need for treatment when we live in a country that so many look to as a land of opportunity and prosperity.”

Brownback noted that this and similar topics are reverberating around the globe. For example, a recently released survey in New Zealand found that 1 out of 15 people who took genetic tests for hereditary diseases felt coerced into doing so by family members, insurance companies or mortgage lenders.

The Estonian government’s health Web site states that since a hereditary diseases program was instituted in 2003, 40 babies with Down syndrome have been “unborn,” and the birth of “sick babies prevented” with the help of prenatal diagnostic tests.

The Netherlands is discussing euthanasia for children up to 12 years old—specifically targeting disabled children. Research suggests that in the Netherlands pediatricians make decisions in about 100 cases each year that result in the death of babies with severe multiple handicaps.

And in the U.S., women diagnosed with an abnormal baby are coming under pressure to terminate their pregnancy. In 2001, the American College of Obstetrics & Gynecology recommended tests for cystic fibrosis to all Caucasian couples even though Kaiser Permanente reported that, among its Northern California patients, 95% of the couples who were carriers and whose fetuses tested positive terminated their pregnancy.

Brownback continued, “Insurance companies, both public and private, will have to make coverage decisions as genetic screening technology continues to advance, and such decisions must be made based on the ethical impact of the tests on the primary patient, the unborn.

“While I applaud our passage last year of The Genetic Non-Discrimination Act, we must assure that families receive full protection from discrimination on the basis of tests on the unborn. Health plans that do not normally cover surgical abortion may determine that is cost effective to do so if the procedure occurs in concert with the genetic testing protocol. It is my hope that this hearing will start a dialogue around some of these issues before health plans and geneticists start making these decisions for us.”

Brownback noted that frivolous lawsuits are already clogging the courts and driving up the cost of health care. He expressed his concern about new cases where doctors will have to face issues of “wrongful birth” when tests err.

Brownback concluded, “I would argue that our world is a much better place when it includes the presence of disabled men, women and children whom we care for deeply. In addition to the many abilities that persons with disabilities have which are equivalent to others, these individuals bring a beauty to our world that we don’t want to miss. We learn compassion, heroism, humility, courage and self sacrifice from these special individuals—and their gift to us is to inspire us, by their example, to achieve these virtues ourselves.”